Understanding the Startle Reflex and Cerebral Palsy

Richard_Scope

Why Fire Alarms Give Me Anxiety as a Person With Cerebral Palsy

Lucy James

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Cerebral palsy is a condition that affects movement and/or motor control issues to varying degrees. For me, living with mild left hemiplegia often includes instances of tripping over my feet and busting up my knees and elbows, or frequently feeling like an 82-year-old woman trapped in a 22-year-old body because of muscle stiffness, cold weather, or fatigue.

I also have a significant amount of anxiety about fire alarms. Barking dogs, fireworks and popping balloons take a close second.

It’s a side of my CP that I don’t like to let anyone see, and a symptom that most people wouldn’t even think to relate to my tight muscles. Until recently, I didn’t realize it was something related to my condition. The Moro reflex, commonly known as a “startle reflex,” which all babies are born with, goes away after birth. However, this reflex doesn’t completely disappear in individuals affected by cerebral palsy, which can explain our heightened and “jumpy” responses to loud or unexpected stimuli.

As a little girl, school fire drills in particular gave me an overwhelming amount of anxiety. I just couldn’t take the anticipation of an upcoming blaring, screeching noise. By second grade, I started to cry in the middle of class at even the mention of an alarm. I can even remember times where my pencil would shake during lessons if I had overheard adults talking about an upcoming drill. No one really understood why I was so nervous. Once or twice, a teacher would walk out with me, but needing a “buddy” wasn’t the issue. The startle still came as the alarm went off, and then I was fine for the remainder of the drill.

Honestly, I was embarrassed. This was also before the days of typing symptoms into Google, so none of us made the connection between my startle response and CP. I went to school trying to figure out when the alarm would go off, would be relieved for a few weeks because we weren’t due for another drill, and then become nervous all over again. This went on until I graduated high school!

Finally, one of my favourite teachers broke that cycle of my fire-alarm-induced panic. It was a morning during my senior year when the principal announced “Please ignore all fire alarms because the system is being tested.” Great. So now I was expected to sit in class and try to control myself physically and mentally while this fire alarm could start blaring repeatedly at any moment.

The alarm went off, and I felt my muscles tense and jerk. Once again, my heart started pounding, and it felt like the room was closing in on me. The last thing I wanted to do was begin hyperventilating in the middle of fourth-period history. So I did the most logical thing I could think of — I hid in the bathroom.

She must’ve noticed I was gone for a particularly long time because she came over and whispered, “Are you OK?” Thankfully, she was one of those few people in school who knew about my CP and who would take me seriously if I told her the truth.

“No, um… my body doesn’t do fire alarms very well. I’m so shaky right now!” I answered.

“Do you want to go outside?” she asked.

My head popped up. “I can do that?”

“Sure, go get some air, to help you calm down.”

Needless to say, I practically bounded down the stairs and out the door. Finally, I could breathe! I regained composure of my body, no longer feeling so trapped by an impending loud noise. I didn’t just feel better physically either; for the first time, I finally felt like someone cared enough to help me handle my startle in a way that actually made a difference. I only wish I could have figured out a solution like this sooner, as it probably would’ve saved me many episodes of misunderstood panic and tears.

Thanks, Mrs K, for letting me “bend the rules” for a few minutes that day. It seems like the smallest thing and makes me laugh now, but it helped me regain control for a little while. Plus, I’ll never forget how nice (and partly rebellious) it felt to stand on the curb outside my high school at 11 A.M. on a Wednesday. And just for the record… I still twitch at fire alarms, I don’t plan on getting a big barking guard dog anytime soon, and please, please don’t ever sneak up on me because I can almost guarantee you I will jump across the room.

Alex_Alumni

I didn't actually know about the startle reflex and CP until a few years ago, but I definitely have it. It's really affirming to know it's something I physically can't help, rather than because I'm overly nervous or anxious. I feel a bit less embarrassed about it happening, as I can't explain the reflex to people who don't know now. 

Thanks for sharing @Richard_Scope  

Cplife

I didn’t know this was connected to my cp the slightest noise makes me jump and my muscles can hurt 

Alex_Alumni

It can be a real pain can't it @Cplife How do you feel now you know it's connected to your CP?

Cplife

Hi feel quite relieved to be honest I’m 51 and I’m still learning stuff about my Cp that I feel the doctors know nothing about I’ve always jumped at things that wouldn’t make other people  and always been pulled up about it 

Alex_Alumni

Yes same for me! The cinema is always an interesting experience 

For things like fireworks night I always tend to stay in and listen to music or do a bit of gaming with headphones in, which does help. 

Cplife

Yeah cinema one for me too even something as simple as a phone ringing can make jump. I’ve never enjoyed fireworks now I understand why.  

sezsixx

This is very interesting to read! I didn't realise my "jumpiness" was CP related. Everyone has always joked at how jumpy I am. 

Cplife

sezsixx people always joke at me too very interesting read that I relate to as it doesn’t take much to make me jump 

Richard_Scope

There is no clear answer yet as to why the Moro or startle reflex stays in people with spastic CP and about 3% of the general population. Moro it Startle reflex is a baby's 'fight or flight' mechanism and usually calms around 2 to 3 months.

There are things that can make it worse e.g. illness, tiredness, menstrual cycle, dehydration and caffeine. G.P.s tend to prescribe Beta Blockers but I'm yet to hear of any positive outcomes from this treatment in terms of reduction in startle. I'm sorry I cannot give a definitive answer to this. 

Cplife

Richard_Scope 
I didn’t even realise that this was part of my cp I’ve lived with this long I wouldn’t take meds for it. 

I’d also like to ask you a question I have hearing problems that I noticed when I was a teenager but I was always told I was to young 
I now where a hearing aid but even when I’m wearing it I always hear it’s like my brain switches off  do you think this is part of my cp. 
the doctor said because there was no medical records from childhood he can’t say for sure

Richard_Scope

Interesting question. Are you saying that even with the hearing aid, you still cannot hear?

Cplife

Richard_Scope sometimes but not all the time it’s as if my brain can’t understand what has just been said to me 

Alex_Alumni

There is no clear answer yet as to why the Moro or startle reflex stays in people with spastic CP and about 3% of the general population. Moro it Startle reflex is a baby's 'fight or flight' mechanism and usually calms around 2 to 3 months.

There are things that can make it worse e.g. illness, tiredness, menstrual cycle, dehydration and caffeine. G.P.s tend to prescribe Beta Blockers but I'm yet to hear of any positive outcomes from this treatment in terms of reduction in startle. I'm sorry I cannot give a definitive answer to this. 

Thank you Richard, don't apologise, it's fascinating to learn more about it Perhaps one day we'll know more about potential treatment, or ways to reduce the startle.

Danielle_2022

Thanks for sharing this, Richard. I also have CP and didn’t realise there was a name for this until just a few months ago, despite being almost 25. It’s always validating to hear that others have similar experiences because it’s something that I used to be so embarrassed about

Tony60

Very Interesting, I'm 60 now and have jumped at all sort of everyday noises as far back as I can remember. It can be embarrassing at times.  

Cplife

Columbo 
I know how you feel it’s been the same for me. They do say you learn something new every day 🙂

L_Volunteer

So glad to see how many people this post has helped and reached! Please know we will always be here for you and answer any questions you may have. Nothing is too big or too small. As we can see here, questions often bring people together through shared experiences too! 

APHRODITESHEART

THANK YOU, SO MUCH FOR SHARING.. I DO NOT HAVE C.P. BUT I DO EXPERIENCE SIMILAR , EXCEPT I FREEZE LIKE A STATUE. I HAVE HAD NO EXPLANATION FOR THIS OVER THE TOP RESPONSE. A REAL EYE OPENER.

Danielle_2022

That’s really interesting, @APHRODITESHEART. Thank-you for sharing your experiences here. Even though you don’t have Cerebral Palsy, I think it shows that many of us are more similar than we are different, hey? My partner once described it as being similar to a fainting goat, which I thought was hilariously accurate

Emma1980

I found this very interesting as I’ve had this problem for years and found it very upsetting and sometimes it gets to the stage I really don’t want to go out because the slightest noise startles me and I feel like everybody is laughing and all eyes are on me. if I go anywhere where there is a dog I freeze as I can’t bear the noise when they bark. Also I can’t bear sudden noises so it is a relief to find out that I’m not the only one I just need people to realise that it is part of my disability and I can’t help it. I can’t even go to the cinema or a live show as I simply find it too loud